I first noticed I was having a problem 3 years ago, when I was drying my hair with a blow dryer and my hand started shaking, my heart beating out of my chest...I thought for sure I was having a heart attack. Did I run to the ER, No...like most women I just tucked it into my brain and thought I'll keep tabs on it...it will pass. Well it did not go away. I realized I was having a problem when the rage was to a point where my husband was ready to move out and get an apartment just so he could function(He stayed bless his heart). My body hurt all the time. My joints, my feet, my hands just ached all over. I choked alot on beverages. I could'nt sleep and I had night sweats and mood swings. I was a basket case. My Internist set up some heart test, like a thyallim stress and ekg and a chest xray which of course all came back normal. My blood work showed a cholesterol level of 465 total (yikees) and a low potassim level.I went on like this for a couple of years (2) and one day I had such a severe attack of multiple symptoms that I made my husband drive me to the University of Michigan Hospital think surley a place of this caliber can figure out what is wrong with me. They did alot of blood work and contrast CT and low and behold my heart seemed just fine (even tho I felt like I was dying) butttttt.........they did find a tumor on the thyroid that was worth looking into, ummmm why didnt my own doctor check my thyroid? I present classic thyroid symptoms. So I went in for a FNA(a fine needle asperation) it was a biopsy of the 3cmm tumor which showed suspicious hurthle cells and as a result I had surgery for a total thyroidectomy and was introduced to a nice Endocrinologist who put me on sythroid and said my symptoms should now be elimenated with the thyroid replacement medication. Cool I thought, now I can get my life back in order and lose some weight and feel good again.but it never seemed to come together. I still have joint pain my weight keeps climbing now my joints hurt just as bad or worse, I'm still moody/ragey as ever and tired all the time not to mention I have a stomach that it growing like an alien being and my back (lower) hurts so bad I still can sleep at night. I was begining to think maybe this is more then just a thyroid problem, but what else it could be???This lead to a lot of research on the internet which I have finally come to belive may have cracked the mystery behind how I have been feeling. ie: CUSHINGS DISEASE I have an appointment with my doctor to plead with him to start tests for cushings based on my self diagnois. I can only hope He will listen to me. I will keep you posted
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When you get tested for Cushings, make sure that the tests include adrenal and antibodies. Without the adrenals test it's likely you're going through even more body pain than you have to- believe me, I'm going through the exact testing processes you are about to. Bring a check list of symptoms. Bring a diary of sorts- of the days and times you were in pain, or had issues. You'll start to see patterns- in the mornings, you may feel like you're not rested. If it's 2pm, you may have an increase of pain for no obvious reason. Keep track of the patterns, and also keep track of what you've eaten- when there is caffeine, when there is salt, and when there are sodas.
All chemicals are affecting your hormones. If you eat red meats, note that. If you eat soy, note that. Soys and hormone injected meat will cause havoc on your thyroid, pituitary and cortisol.
Also note if you've taken birth control pills, and for how long, as your estrogen levels may be elevated.
Pseudo-Cushings and Cushings Syndrome are often discounted by endo's because they don't know what you're like when you're NOT being affected by cortisol. Normal for you may not be what "Normal ranges" are on tests. See if you can get a record of any tests you've had- and if there are patterns of increases or decreases in triglycerides, hormone levels, and sodium. So few doctors know how to properly test- they just do 24 hour urine, or saliva, but not both. They do blood serum, but not serum, urine, and not over a period of time. The only way to know if you're going through cyclical cushings is to test for a full month- expensive but worth it.
Hang in there... the Cushing's Support board is WONDERFUL.
January 14, 2009 - 4:53pmThis Comment
Lisa,
I am glad to hear that they have finally figured things out for you. I had my thyroid and parathyroid removed somewhere around 5 years ago. I was very fortunate, I had a wonderful endo and surgeon who monitored all levels and I have been running good for years. Time to time my calcium levels will just drop and I have to double up on a drug called Rocatrol used for calcium absorption. I take Rocatrol and calcium everyday, and will have to for the rest of my life.
I can tell you first hand, low calcium can be very dangerous... please stay on top of your blood work. After my surgery I was hospitalized for an extra week because my calcium levels were extremely low 2.5 and 3. Once they got me pumped up with enough calcium it was upstream.
There is a nifty little trick for checking low calcium.. my endo taught me this... lower your bottom jaw so your mouth is slightly opened and relaxed, then use one finger and tap right where your jaw bone meets, right next to your ear. If your face twitches, eyes, lip, or nose, etc... that means your calcium is low. If your entire side of your face twitches then your calcium is really low. Whatever side of your face that you are tapping with finger will be the side that could twitch. It sounds crazy but this is medically practiced to detect low calcium.
Good luck and take good care of yourself! You are your best patient advocate.
August 20, 2008 - 1:46pmThis Comment
Hello! We are so happy for you and that you wanted to share how much your health has improved. How were you able to find this doctor? How long have you been taking the calcium, vitamin D and fish oil? Isn't it great when you feel like you've hit a wall and someone has the ability to not only make you feel better but give you hope? And it sounds like you've made a lot of progress with your 2-mile walks and 12-hour shifts. Best of all, you seem to have such a strong spirit. Will you keep us updated on your treatments and any further progress?
August 5, 2008 - 9:18amThis Comment
Dear Lisa,
Wow, you have quite the story to tell! Thank you so much for sharing this with all of us. It's amazing how you'll be able to help somebody by posting your story. All of your symptoms--the cholesterol level, the pounding heart, your choking on beverages (which is really common with a thyroid disorder), and being unable to sleep and having mood swings--what a mess! I'm so sorry that you've had to endure all of this--it's way more than one person should have to bear. It never ceases to amaze me when I read stories like yours that no one was able to diagnose what was wrong with you, and that you went on for so long like that. You are one strong woman--that's all I can say. And good for you that you've advocated for yourself, especially since you've had your thyroid removed and you're still having all of these symptoms. Something is clearly not right and it's so great that you are addressing that! You should not have to live this this--you just shouldn't. There is no excuse and no reason. I don't know much about Cushing's Disease, although I will ask a couple of our doctor experts if they will give us some helpful information. And I'll come back and post that information, or I'll have them come on and post that to you. Please let me know how you are doing--if you've been to the doctor and what he or she has said, and what tests you've had run for Cushing's Disease. Thank you so much for sharing your story as I know you will help so many other women who have suffered like you have. We just need to get you well--that is the goal. Best in health, Michelle
August 3, 2008 - 9:52pmThis Comment
Hello All,
August 5, 2008 - 6:47amI am writing this as an update to my story...finally some news that actually has helped me to get better!!! I went to a new Doctor who was absolutely wonderful, attentive and intelligent. He ordered the right tests based on what I was telling him and low and behold a real honest to goodness diagnoisis was made!!! I do not have Cushings all my test were negetive which I was happy about, but I did have a BIG problem that turned out to be related to having my thyroid remove last year, and that was my parathyroid glands had been moved to my neck area during my surgery and that most likely only one out of the four was functioning based on my non existant vitamin D levels and scant calcium levels. So a determination of Hypoparathyroidism was made with hypocalcenemia. Massive oral doses of calcium and vitamin D and fish oil was the prescribed fix it...and it is working I am feeling 100 % better already. My belly bloat is going down rapidly, the low ache in my back is gone. I no longer sound like I am rolling over on a bag of potato chips when I move and I am able to walk 2 miles a day and work my 12 hour shifts at the hospital and feel like a human being when I arrive home at the end of a shift. It is wonderful and I am looking forward to my future now nad no longer wishing I would lay down and just die...even my mental alertness is vastly improved. It amazes me how much our bodys will try to hold us together when something is wrong. I know now just how sick I was and how close to death I could come and not really know it...but all is well now and hopefully my parathyroids will kick back in with some of the pressure taken off by supplementing the D and calcium..if not I'll be stuck on supplements but hey its better then feeling like a walking dead person right...Thanks so much for your posts, I appreciate the uplifting comments and hope my post will help someone in the future.
regards
Lisa
This Comment
It is frustrating to go through so much, think you've turned a corner and find out more work needs to be done. However, researching and advocating for yourself will get you there quicker. Good for you in trusting your instincts and knowing despite treatment, something wasn't still didn't quite feel right. For those not familiar with Cushing's Syndrome, you can find more out about it here. How have you been tackling the joint pain and emotions?
July 9, 2008 - 8:14amThis Comment